Friday, October 25, 2013

Batteries were not included

I know I said I'd get this out sooner; however, life just got in the way.  Work has been very busy (that's good) and so has our home life.  I will say that my tremor is basically gone, unless I really start adjusting the settings on my DBS to a program and voltage that I don't like.  However, my gait, balance and freezing are all still there.  To label this disappointing is an understatement.

I have been charged up since the beginning of September.  The first two weeks were just low level voltage to get my brain used to electricity.  The remaining weeks we've been playing with which electrode combinations I use and which voltages, pulse widths and frequencies work best.  I am not allowed and cannot adjust anything except the voltage range  (I'm given about a 2V range per program) for one of the four programs that I are currently available to me via my remote.  If any engineers are reading this, it's basically a process which could use a good Design of Experiments (DOE), but that is not how they do things.  I might have to work on that and show the nurse who programs me the process.

I have worked through three of the four electrodes (I originally thought there were only three) and a couple of combinations as well.  I've found settings that make my meds last a very short time and I believe I've found one that may extend the effect of my meds as well.  This is a good thing and is the first very positive result.  I need a few more days of testing to make sure what I am feeling is real and not just some random occurrence.  I say this because during the early part of my testing, I had moments where I had not taken any medicine and I was walking fine.  However, these were usually short-lived and didn't repeat themselves.

My wife is understandably, frustrated as am I.  But, I am hopeful that this will be an overall positive for me even after the stroke.  The one real pain-in-the-ass part is the wire from my brain to the battery seems very tight.  When I turn or stretch my neck in certain ways you can literally see it against my skin and feel it as well.  My neurosurgeon says it's fine and I'll get used to it, but it is not always comfortable.  The battery/pulse generator was bothering me for the first few weeks after surgery, but now I hardly ever notice it, even when running.

As for running, I've signed up with Team-Parkinson's to run the LA Marathon.  When I started training, almost 7 weeks ago, I could barely run for a couple minutes straight.  I am now on my first full week of running with no stops and have run 20 minutes each time.  You can see my progress on my daily mile feed in the lower right corner of this blog, if your interested.  I have never run a marathon and the only half marathon I've done was in 1999.  However, I am positive I will be able to continue increasing my training and get to the marathon distance thanks to the great support of my family.  So, wish me luck and I'll try and get a bit better at keeping the blog updated.

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